The Story Of A Rare Bird

Written by on January 15th, 2013 – 9 Comments

Around this time last year, my vision got blurry like someone had smeared Vaseline over my eyes and it felt like my right eye was being pulled out of the socket. The pain was somewhat like the bad migraines I have frequently and also similar to a sinus infection. I went through four episodes of this between February and July. Despite numerous attempts to get to the bottom of why this was happening, for some reason the obvious answer kept being overlooked. Finally in late July, I happened to mention it to my MS Specialist. She immediately referred me to a neuro ophthalmologist who ran a ton of tests and informed me that my problem was optic neuritis. In light of my medical history, he wanted to run an additional test, for NMO-Neuromyelitis Optica, a disease which very closely resembles MS.

I’d had an NMO test 5 years ago when I was in the process of being diagnosed with MS and it had come back negative. While I was waiting on the results of this latest test, I learned through the MS Society that I had the opportunity to learn more about NMO by attending a patient information day out at UBC. I signed up and went.

Two weeks later, my NMO test results were in. I’d tested negative again. You would think that would be the end of it, but no. The problem is that the NMO test is not foolproof. Forty percent of people who get a negative result test as a false negative. You can test negative and still have NMO. Fortunately, thanks to attending the NMO patient information day, I was able to arrange to get a consult with an NMO expert, one of two in all of Canada.

I met with the NMO specialist. After an extensive neuro exam, a review of my MRIs,  the written reports that went with them and the results from all the tests I had just had done for the optic neuritis, my diagnosis was amended to NMO. When I heard the words, I was in shock. I’d suspected something wasn’t right with my MS diagnosis for some time, but getting confirmation that my gut feeling was right all along was still hard to believe. I was told that I am lucky to be alive and as able-bodied as I still am. Talk about a reality check! I don’t think it’s fully sunk in yet.

So what is NMO and what’s the difference between it and MS? The Mayo Clinic* explains:

“Neuromyelitis optica (NMO), also called Devic’s disease, resembles Multiple Sclerosis in many ways.  Both diseases affect the central nervous system. In both diseases, the immune system reacts against the body in what are often termed episodes or attacks. These episodes cause inflammation and destruction of cells. In NMO, the primary targets are optic nerves and the spinal cord, which are also commonly affected in MS.

There are a number of differences between NMO and MS. Patients with NMO often have severe, rapidly worsening symptoms. When the optic nerves are affected, blindness can occur. Likewise, when spinal cord cells are damaged in NMO, patients may experience paralysis, loss of bladder and bowel control and, occasionally, breathing difficulties that can prove to be fatal. In MS, initial episodes usually are mild and not life threatening. Over time, patients with MS may develop disabilities including paralysis (most typically in the legs), but permanent disability often tends to develop gradually and not as a result of sudden attacks as it does in NMO.

Patients with NMO usually have normal MRI brain scans early in the course of the disease, while the brain scans of patients with MS may show abnormalities. About 80 percent of patients with NMO have distinct, long lesions in the spinal cord on MRI that aren’t present in patients with MS.

The treatment options for these two illnesses also are quite different. MS is initially treated with immunomodulating medications  that work by reducing inflammation. These medications don’t help patients with NMO and may actually cause more severe attacks than would otherwise occur. Patients with NMO respond to immunosuppressive medications, to prevent future attacks. Plasma exchange — where antibodies are removed from the bloodstream — is successfully used to treat patients who don’t respond to initial therapies.”

Five in one hundred thousand people have NMO, making me what a friend of mine refers to as a “rare bird”. I wanted to share my amended diagnosis with all of you because it is quite possible there are more of us rare birds out there in the MS community, who are completely unaware that NMO exists. While NMO is treated differently than MS, the neurologists I’ve spoken to believe it’s a variant of MS.

I lived under the diagnosis of MS and undergone extensive treatment over the course of the last 5 years. MS is a part of my story-nothing’s going to change that. I will continue writing here, working with the MS Society in serving the MS community and raising awareness for both MS and NMO. People with NMO may be rare birds, but when it comes to demyelinating diseases, we’re all in this together.

To learn more about NMO, please visit: http://www.guthyjacksonfoundation.org/

*Mayo Clinic NMO information cited in this post can be found at: http://www.mayoclinic.org/medical-edge-newspaper-2010/nov-26b.html

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9 Responses

  1. John says:

    Thanks for sharing this, I can relate.

    Peace ~ From a fellow rare bird

  2. danben says:

    I have found when my vision gets foggy/cloudy I close my eyes and keep them shut for 5 to 10 minutes or worst cases 15 minutes straight and re-open them and all of a sudden it’s better but only goes for about an hour, now if I have an hour nap which I do 2 times a day from the fatigue my vision is clear for 3 or so hours after a nap so it all depends how long you close your eyes for preferably in a sitting position and head down like you’re napping, the optic nerve relaxes and restarts in a way.

  3. lynn lavallee says:

    About 1 years ago my doctor said i thing you have ms but mri came back negative but he still believed i have ms but recently my vision when extremely bad so one of my nurse who been around at my worst said it could be nmo but i live in a remote area of ontario canada and there is no specialist of any kind i just had th blood test done and they said it would take at least 6 weks before i have the results i need some help in to finding specialist for my health i am begging you because nobody has never even heard of this disease and my doctor doesn’t even know where to start with this so if anyone could give me some place where to look and start i would be for ever in your debts

    • Lynn, I would recommend you get in touch with the Guthy Jackson Foundation. You can find them here: guthyjacksonfoundation.org I believe that if you have a neurologist, they can help your neuro get a consult with an NMO specialist by phone so they can help you. It does take a few weeks to get the results for the NMO test. Please remember that there is a 40% chance of a FALSE negative result. You can test negative and STILL HAVE NMO. I had 4 tests and all were false negative. My diagnosis of NMO came from having a consult with an NMO specialist who reviewed my MRIs, medical history and neuro exams. The test alone is not definitive unless you get a positive result. A positive test for NMO is 100% accurate. The Guthy Jackson Foundation has a very good NMO guide book, which they can send your doctor, so he/she can learn about NMO. I know this must be really stressful, but please know you are not alone.

  4. Flyderaght says:

    Lynn, there is a specialist at MCgill university for NMO. There are none here in Ontario. Until a few years ago, the bloodwork had to be sent to the states as the test was not done here. All they can do is provide you with immune suppression drugs. There is no treatment for NMO sadly. My Rheumatolgist has been excellent. I cannot say the same for the MS clinic who actually had the gall to suggest I get my prescription checked during my last visit. http://www.guthyjacksonfoundation.org/mapping-nmo/

  5. Lelainia says:

    Just to clarify, there is treatment for NMO, but there is no cure. Treatments include immunosupressants, steroids, IVIG (intravenous immunoglobulan), chemotherapy and plex (plasma exchange).

  6. abiaa says:

    I face similar problems in life because of NMO. My right diagnosis took a few years to come.

    Read my story at http://mynmostory.weebly.com/

    • Lelainia says:

      Hi Abiaa,
      Yes, figuring out you have NMO can take time. It took me 30 years to get the right diagnosis. I hope that you are doing okay and have good medical care.

  7. Ruth savage says:

    Hello my name is ruth it took 20 years for me to get a right dianoise I always knew it was something else the ms injection rebif never helped it made me worse because I was taking it for along time I’m now in a wheelchair almost blind have limited use of my right side and in pain most of the time my doctor never listened to me I went on my own to John hopkins and they told me it was devic’s diease if anybody out their thinks it might be Devics diease not ms you will find a doctor just don’t give up I almost did hope everyone is well ruth

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